Tuesday

There really aren't many updates from today. Carter had another echocardiogram, and they believe that the mass may be getting smaller. We'll hopefully have an update on the plan tomorrow after the cardiologists have their meeting. He's also stayed negative on his blood cultures which means that his body is still fighting off the infection. Mikey and Jovie went up to the hospital today for a "sibling hour". A nurse showed them pictures of the NICU, and explained what all the monitors and tubes are for. The kids seemed to really enjoy it, and seemed proud to talk about Carter. They were so cute!

Baptism Day

Carter got baptized today. Although it wasn't in a church, or with all of our friends and family, it was still very special to us. We were able to have his godparents, Marty and Nelva, there for the event. Carter had to be sedated because he was thrashing around like a mad man about 20 minutes before his big event. We really think that the little guy is starting to feel better because he's definitely got a lot of spunk and attitude. He certainly did NOT like being messed with today.

The cardiologist came to meet with us again today, and they've decided that since Carter's cultures have been taking longer to grow bacteria, and since his blood counts have been coming back better that it would be best to wait for the surgery. It seems as though Carter is finally starting to fight off the infection, so the doctors want to just wait and keep a close eye on the mass in his heart. They will be meeting again on Wednesday to discuss his case. Until then, Carter just needs to keep fighting, and he'll get another echocardiogram tomorrow. On another positive note, he's now eating 28 CCs (or 1 ounce) per feeding. That's amazing to us since 10 days ago he was only eating about 3.

Easter

We had a pretty good Easter day. The kids woke up early, and enjoyed their prizes from the bunny. They thought that it was very cool when they saw that even Carter got some gifts. Afterward we took them to Carter's hospital to see where he was staying. While we were there, we talked to the Cardiologist about the infection. There is a small mass next to a valve in his heart that they believe is infected and why Carter can't seem to get better. They feel that the only way to get rid of it is to do an open heart surgery. The scary part about this is that the location of the mass is pretty rare (go figure), so this surgery is pretty complicated. He will have to be put on a heart and lung bypass machine while they do it. While we don't like the idea of our little guy undergoing a huge surgery, we know that this is probably the only way that he can get better. The Cardiologists are going to meet again tomorrow to see if they can find any other options, but it definitely sounds like the surgery is going to be the best one. If we decide to do this, it will happen in the next couple of days. With this new information, we've decided that it would be best to get Carter baptized tomorrow. A priest is coming at noon, and Carter's godparents will also be present.

Coming Along

Carter's cultures came back positive for infection this morning. We could tell that he didn't feel very well today, but we're guessing that it's because his knee was hurting him. The doctors are still deciding exactly what they want to do with the infection in his heart. His CT scan of his chest came back clear yesterday meaning that none of it has moved to his lungs. They think it may be an infected clot, and are considering putting him on blood thinners to get rid of it. They drained the knee this morning, but it was already starting to get puffed up when we left. The doctors are kind of waiting to get a game plan together before they do anything else. We did notice that Carter is starting to open both eyes a lot more, and is moving his arms and legs more. It's good to see him becoming more aware of his surroundings. I assured the little guy that the Easter Bunny would be visiting him, and he seemed to like that plan.

Thanks to the sister britches who just sent us an Easter blessing. You know who you are ;)

Two Weeks Old

Carter had another very busy day today. We were told that it would be a quiet day since they cancelled his scope, but as we've learned with Carter, that's never the case. When we arrived he was getting another echocardiogram on his heart AND an ultrasound on his knee at the same time. He developed an abscess on his knee during the night which will most likely be drained tonight. The echo showed that there is a mass that is sitting on one of the valves in his heart. The doctors have been watching it closely for the last couple of days, and believe that it could be a vegetation from his infection. They noticed that it actually got smaller today which either means that the medication is working, or a piece has broken off and gone into his lungs. He got a CT scan of his chest a little later to see if any of the mass is in his lungs, but we haven't gotten the results yet.

The best piece of news that we got today is that his blood cultures came back negative for infection. His white blood cell count also stayed the same which could mean that he's finally beating this infection. Let's hope that he keeps it up tomorrow. Our little chunk also now weighs 5 lbs. 5 oz. He's packin' on the pounds!

Day 13

Carter is still battling the infections, but we're hopeful that he'll start to improve over the next few days. When we showed up he looked like he had a little more spunk in him. His physical therapist showed up to teach us some exercises to do to help Carter with his motor skills. Carter seemed to really enjoy them, and we could even see some improvement afterward. They gave him some sedation and paralytic drugs for his MRI, and it was so sweet to see his little face all relaxed. Here is a picture of it.

His MRI showed that he doesn't have an abscess on his brain which is really good. It just means that we still don't know where the infection is coming from. They believe that it could be in a valve in his heart, but the fifth echocardiogram hadn't come back yet. If this is the case, then they feel they are treating it correctly. We just need to keep waiting to see if the treatment is going to work.

As for the unofficial news... this is actually a kind of funny story... When Carter was in for his MRI, his oxygen monitor on his hand wasn't working correctly. The doctor decided to put it on his ear, which he soon found out Carter left somewhere in the womb (along with his gall bladder). This sparked the doctor's interest, so the nurse asked him to see if there was an inner ear on each side. She told us "unofficially" that Carter does indeed have inner ears which we hope means that he will be able to hear some day. While we know that he still needs an exam by an ENT to confirm this, we'll take a win wherever we can get it!

Sick Boy

We still haven't made any progress on his infections. The doctors have ordered all types of MRI's and Ultrasounds to try and figure this out, but they just don't have any answers right now. It seems like with every test we learn more about this puzzle of a boy. Today we learned that he may not have a gall bladder which is really no big deal, but it just adds to the questions. The good news is that he has been tolerating his feeds really well, and he is up to 5 pounds 1 ounce. He also had a period of time today where he had both eyes open, and looked at us. Tomorrow we have an appointment with a physical therapist to show us some exercises to do with Carter to help him develop his motor skills. We're hopeful for a very good day.

Please Pray

Today was a not so good day. Little Carter still isn't getting any better with his infections. He now has it showing in his spinal fluid meaning that he has a form of Meningitis. The Infectious Diseases team assessed him today, and think that one of his IVs may be the reason that he wasn't getting any better, so they stripped him of any unecessary IVs and the catheter. Our wish came true, and he did lose some luggage, but not in the way we wanted. Sometimes you really do get what you ask for. They think that he may have an infection in his heart as well, and are going to do an echocardiogram tomorrow to see. His liver is also very enlarged, but is functioning properly so he will be getting an ultrasound on that tomorrow as well. They switched up his antibiotics to see if that will help. He really needs prayers that he can shake this infection.

We also met with the ENT, and as soon as Carter is better they want to do the scope down his throat. They want to check his airway for any possible clefts which could explain his breathing problems. This is tentatively scheduled for Friday.

The Geneticist got the Chromosome tests back, and confirmed that Carter has an abnormality in one of them. I'm not going to go into all of the mumbo jumbo, because quite honestly, I didn't understand all of it, but basically Carter has a small part of one of his chromosomes missing and it is replaced by something else. They are going to do further tests to find out what it is so we can get an idea of what Carter's future looks like. The Geneticist told us that since he has a Chromosomal problem that there is a 95% chance that he will have some sort of mental disability. There is a wide range from mild to severe that he could have, so we are going to stay hopeful that it is in the mild range. Either way, we know that Carter is a very special little boy and we are going to do EVERYTHING we can to make sure that he lives life to his fullest potential. We know that all of our family and friends will help to support us in giving Carter the love and care that he needs. God most definitely sent us this little blessing for a reason, and we are ready for the challenges that lie ahead. While we know that this was important news, we want to focus our efforts on getting him past this infection so he can improve on his eating and breathing. We're very ready for him to come home.

CT Scans

Our little guy looked really good today. He did well with his feedings throughout the night and today. We are glad to see that he's making steps in the right direction with that milestone. Carter had a really big day today. He started off with a CT Scan of his head and chest. We only got the results of his chest CT and it shows that the blood vessels don't constrict his airway, so we still need to figure out why the little guy has trouble breathing. We're hoping to find out about his ears tomorrow. His chromosome test came back as well and did show a small abnormality, so we need to do further testing to find out exactly what it is. That test is going to take a couple of weeks to get results. Otherwise, he just rested. His blood cultures still came back positive for infection, so he's still trying to fight it off. The Neonatologist did say that he thinks that Carter may be ready to come off the ventilator soon. He is on the lowest settings, and he seems to be breathing fast which makes them think that he's trying to breathe without the help. We're going to keep on praying for good news tomorrow.

Nine Days Old

Today was a quiet day for Carter. He really needed some rest, so they gave him sedation to help him relax. Carter is still fighting off the infections, and had to be given some platelets and red blood cells to help him on his way. Those have really seemed to help, but we really won't know until his cultures come back in the morning. Since he is on sedation, his bladder started to not work properly, so they gave him a catheter. Every time we visit him it seems that he gains more luggage... he's now up to 3 IVs, 4 monitors, a feeding tube, a ventilator, and a catheter. Hopefully he'll start to drop some soon. The doctors started his feedings again, and he seems to be tolerating them rather well. He really looked pretty good today, so we're taking that as a really good sign that his body is doing what it should. Tomorrow is a big day for the little guy. He'll be getting a CT scan to see what exactly his inner and middle ear look like, and also to see if the blood vessel across his airway is impairing his breathing. Let's keep our fingers crossed that we'll get some answers.

We also wanted to thank everyone for their prayers and well wishes. Thanks to all of our friends and family for the MANY ways that you have helped us through this, and thanks to Michael's work for your generosity and for the cookie bouquet. Those aren't going to last long around here.

Square One

Well, we're back to square one on a few things with Carter. Last night he was having a lot of trouble breathing. They think that it's because of his infection, so they decided to help him out by putting him back on the ventilator. We're glad that he's getting the help he needs, but a little sad to see him take some steps back. Hopefully now he can concentrate on getting better. They are also suspending his feedings again until he starts to feel a little better. His cultures came back and show that he has a Urinary Tract Infection, and an infection in his blood. His platelet count is a little lower than they would like, so it's possible that he will have a blood transfusion tonight. He's really a sick kid right now, so please pray that he can overcome this quickly.

Today

Today was a pretty good day. Things got a little scary for us when on the way up to the hospital, the doctor called to tell us that Carter has an infection. She wanted permission to take some spinal fluid from him to test for Meningitis. The doctor thinks that it's unlikely that he has it, but they want to cover all of their bases. Poor little Carter got sent through the ringer today. He had a VGUC this morning which tested his bladder to see if any of the urine was refluxing back into his kidneys. We found out that his actually does, so that is just one more thing to add to his list. I guess that this kind of thing can cause a lot of urinary tract infections, so they believe that could be the infection that he has. We won't really know for sure until all of the labs come back on Monday. The treatment for that problem is to be on a low-grade antibiotic until he either outgrows it, or has surgery to correct it. The doctors didn't really seem to concerned about it at this point.
We also got the results of the echo back, and found out some problems. First, he had a valve that should have closed at birth, but was open a few days ago. The echo from yesterday shows that it has almost closed on it's own, so we have nothing to worry about as far as that goes. The second thing they found was a valve that crosses across his airway that really shouldn't be there. They are going to do a CT scan on Monday to see if that is what's preventing him from coming off of the high-flow Oxygen mask. If that is the problem then it will need to be corrected soon to help him with his breathing. If not, they acted like it was nothing to worry about. They did suspend his feedings when they found out about his infection, but fed him 10 ccs when we left. Hopefully he'll digest it.
The Plastic Surgeon came to visit Carter today, and told us that they would repair his lip at the age of 3 months as long as he weighs 10 pounds. His palate will be repaired at age one, but will require two different surgeries. His prostetic ear will be done at about the age of 5. All in all, it was a good day, and it was nice to feel like we're making some progress on everything.